Alemtuzumab: The cynical business of rebrand and recost

In August, I posted a blog about the withdrawal from the market of the drug Alemtuzumab (also known as Campath and Lemtrada).

As anyone who reads this blog knows, Alemtuzumab is the treatment I have been undergoing as a way to combat MS.

So far for me it has worked.

It has turned my life around. I no longer suffer from tingling feet and legs. My vision is not affected. I no longer get painful spasms in my arms. My hands and fingers work as they should.  I can now walk with confidence. I’ve even done a bit of running since I had the first dose in November 2011.

I feel better. I feel ok again. I feel I can look to the future.

I’ve just had my second (and probably last) dose of the drug.

But I am one of the lucky ones. I am one of the fortunate few who had the opportunity to get this fantastic drug. According to the MS Society, I am one of the 100,000 people in the UK have MS.

This drug might not be appropriate for all of those 100,000 – but for some of them it could offer the chance for a relatively MS-free existence.

But the company which makes the drug, Genzyme has taken it off the market while it seeks a licence for it to be used to treat MS.

Cynically, this probably means the cost of the drug will increase. And fears are that it will increase to a cost unaffordable for the NHS.

This fact makes me feel angry and saddened that a drug which has already made its developers a lot of money to treat people with chronic lymphocytic leukaemia (CLL) is being used yet again to make another fortune at the expense of the health of those people who could really benefit from such a treatment.

I don’t know if the story about a patient with CLL who also happened to have MS was treated with Alemtuzumab and saw a dramatic improvement to their MS is true. Or if this is how researchers realised the drug could be used to help MS. But the simple fact of the matter is that the drug was developed (and paid for) to help patients with CLL. As a complete coincidence, it also happens to help people with MS.

So how can Genzyme justify withdrawing the drug and then presumably re-releasing it with a heftier price tag?

According to its website: “Genzyme is dedicated to making a major positive impact on the lives of people with serious diseases. Since 1981, the company has grown from a small start-up to a diversified enterprise with more than 12,000 employees in locations spanning the globe and 2008 revenues of $4.6 billion.”

It’s not just people like me – people who have MS who are dismayed by what is probably going to happen.

T – a neurologist who uses Alemtuzumab to treat some of his patients – commented on my earlier blog.

This is what he said:

“To put it bluntly, Genzyme has withdrawn the drug 'Campath' from the shelves. As the sole supplier you'd think they can't - but they can. It is NOT a licensed treatment for MS so they do not 'have' to supply it. It is a licensed Rx for relapsed chronic leukaemia - so they DO have to supply it - and have undertaken to do so on a 'named patient basis' - for free. So if a haematologist wants to treat a CLL patient they make a prescription, pharmacy order it, it is 'for the named patient only' and hey presto. Unfortunately we neurologists cannot use any "leftovers" under law (or prescribing rules); even tho the blood docs use literally hundreds of miligrams for a course and we use 12mg per day (less than half a vial) for 5 days then 3 days a year later - as you have been blogging about. 

The current list price is about £200 per vial. We split vials for MS-ers like you: so perhaps your total course will cost about £800-1000. Not including 8 days in a bed, food/drink/drip costs/steroids, extra scans etc. Just drug costs. The RUMOURS are that they are looking at a price of £60-70,000 per course for the 'new drug' (ie brand) Lemtrada - ie the 8 doses split 5:3 12 months apart. So perhaps just under £10K per vial!!! So not the "10-20x hike" mentioned in the Independent but a little more eye-watering than that - maybe 50-100x hike. They may well have spent £250M in developing the drug, running rigorous worldwide trials etc, but this will potentially ensure that NICE simply says 'no'; at least in the UK. As sure as eggs is eggs....

We managed to stockpile Campath and have enough to treat all our existing patients, as does the Royal Free so I hear on the grapevine. Other centres, even Cambridge that have developed the damn stuff, failed to do so and as you will know Alasdair Coles has been in the news on about this. Frankly, it is incompetent NHS administrators unable or unwilling to make immediate decisions to buy it with less than a day's notice and hence stockpile; that have caused this shortage aswell as the company. That's also a disgrace.”

So it seems patients and medics are united in pulling this drug off the market to rebrand for sale at a higher price is a cynical, calculating and thoroughly underhand thing to do – everyone is united... everyone apart from those people who are set to make an absolute mint out of doing such a thing.

I suppose for those people who make such decisions, money is no object when it comes to treating the health of ‘me and mine’ but for the rest of us, it’s a pretty shoddy deal when a drug which can turn the health and life of someone with MS around is denied because it is too expensive.

We’ve seen it with the banks – big profits overrule any moral or ethical issues. And I suppose, those with their eye on Genzyme's coffers say rebrand and recost is good business.

But just because it is good business, doesn’t make it right.

Let’s just hope someone’s conscience is pricked into doing the right thing. And soon.